Living with Guillain-Barre Syndrome

Everything started out in February 2000 for my wife.

Well, at first she started getting sick at her stomach, accompanined by vomitting. This went on for quite awhile, she went to a hospital in Shelbyville Ky, she was in there a total of 4 times. Every time the Drs came back with a different diagnosis, they went from urinary tract infections to one thing after another. One of the Drs said it was all caused by stress, well they even did an ultra sound. Which I don’t think they knew how to read the results, anyway.

The sickness only got worse, finally in May my wifes mother had her taken by ambulance to a hospital in Louisville Ky. 45 minutes after she had been there as to which they ran an ultra sound, they came back with a diagnosis of a diseased gall bladder, It was 3 to 4 time larger than it should have been, she had surgery the next day for the removal of the gall bladder.

I thought that would be the end of her problems, Not quite. She started having trouble with tingling & other things. A neurologist that was in the US from Russia was called in to examine her, she suspected GBS by what my wife was describing to her. They did a lot of tests & they confirmed that the Dr was correct, the next morning her respiratory system was shut down, & she died the Drs someway or another brought her back. She went through plasma pherisis 5 times they also did IVIG. She was completely paralyzed at first, she stayed in the hospital for 3 mnths, & was taken to a nearby rehabilitation center.

After 1 mnth they got her where she could walk using a walker, she had to learn how to do everything all over again. The GBS hit her extremely hard, she also had a form of CIDP that the Drs claimed was so advanced they couldn’t even classify it. But anyway she has had one hospital stay after another since 2000.

In 2004 she had to have 2 large stones removed from her bladder, & a mnth later she got a colitis infection that was so bad it destroyed her colin [colon]. No meds would stop it, so she had surgery for the removal of her colin. The Dr said it was one of the worst cases he had ever seen he removed 95% her colin. He said at first he didn’t think she was going to make it to the fact he only gave her a 5% chance of living. But she beat the odds & she fought it & made it, she was in ICU for 3 months due to problems. One of them was they couldn’t keep her temp down, so she was placed on a cooling pad with lines that went to a cooling unit. This was the only way they could keep her temp down, but she finally made it back to a normal temp mode.

She finally got out of the hospital again, I forgot to say she has an illiostomy [ileostomy] & has to wear an ostomy pouch on her lower right abdomen, as to which she is unable to change it because she has limited use of her hands still. So I take care of changing the ostomy pouch, she also has a GTube in her stomach as to which this is the way she takes her meds. They are all crushed & dissolved in water & put in through the tube, thats another thing I take care of. She is currently on generic Neurontin 800 mg 3 xday, for nerve pain as well as Hydrocodone 7.5 500 mg for pain.

Another thing the GBS did was it almost completely destroyed her nervous system, she had constant nightmares & they got to the point I thought she might eventually wind up in an institution. Her psychiatrist put her on Seroquel 300 mg 2 xday, within a mnth the bad dreams went away & she got where she wasn’t afraid to go to sleep. One thing that kept occurring she kept seeing hands trying to grab hold of her & pull her through the bed, but that went away finally. So now we’re just getting on with things she still has the bad nerve pain & the tingling still prevalent but the generic neurontin seems to help keep it under control. I hope what I’ve shared with you gives you a little insight as to why I posted this here.

I’m adding this update as last yr on July 27, 2007 my wife Debra lost her 7 yr battle with the devastation left by
the GBS.